Jaxon is a fun-loving, active 19 month old who loves music, dancing and Mickey Mouse. Jaxon's smile can light up a room and his personality makes everyone he meets fall in love with him. His favorite thing to do is watch his brothers play basketball and he loves any games that involve balls.
Jaxon has not been diagnosed with cancer but is at a greater risk for cancer because he has a genetic condition called Beckwith-Wiedemann Syndrome. Jaxon was born 2 months early with an omphalocele and larger tongue. This larger tongue caused eating and breathing issues. Children with BWS are also more prone to cancer because BWS is an overgrowth syndrome where their organs grow at a more rapid rate. This can cause the sides of their body to be different lengths.
Jaxon was born with an omphalocele that had to be repaired right after birth. He also had a PIC line put in place in the NICU. Due to complications he actually flatlined and had to be given medicine and treatment to be revived. Jaxon’s mom watched her baby turn blue too many times. Since his release he has had 2 inguinal hernia repairs, an orchopexy, a tongue reduction surgery and he is facing a possible eye surgery. He has worn glasses since he was 6 months old and is still followed by a long list of doctors including geneticists, surgeons and craniofacial, neonatal, ophthalmological, ENT and urology specialists.
Jaxon’s family hopes he will grow up to do whatever he wants to do. They want him to know that he has moved mountains and can be or do anything that he could dream up. They hope that through educating people on his condition that we can bring awareness to it and help other parents and give them hope. Jaxon has overcome so many things and always bounces back stronger. People who know Jaxon know that he is never without a smile on his face and his personality can make anyone's day brighter. He is now and always will be a superhero to his family.
Jaxon’s mom writes, “A diagnosis is not the end, it is simply the beginning of a journey that you will share with your child. You will look back at everything and realize that you will laugh and cry and everything in between but it will be so worth it in the end. You will know that you are stronger than you ever thought that you could be.”
A quote from Jaxon’s brothers, Jayson & Braedyn: “Our baby brother is going to grow up and be a real superhero one day, he is pretty strong.”
Information provided by Brandi Cope, Jaxon’s mom